Tag Archives: CAB

NYS OMH’s Multicultural Advisory Committee (MAC) meeting


I participated, together with other members of The Citywide Mental Health Project (Bert Coffman was wearing his many hats), in the MAC meeting (via phone conference) this last Tuesday. What follows is my personal take on the meeting discussions. These are the headings:

Who attended the meeting?

Where are the consumers?

Topics discussed

SH, crime in SH and licensing

Changes to the SH Guidelines = No CAB (consumer advisory boards)?

Who attended the meeting?

Ms. Moira Tashjian, Director of OMH’s Housing Development department attended the meeting by invitation of the committee, although I have the distinctive feeling that OMH wants her to be in this cultural committee, even though housing per se is not a ‘cultural’ issue directly. If I understood correctly, she will be attending the monthly MAC’s phone conferences. I welcome her participation and consider it a plus for us to be able to ask questions directly to officers of the OMH.

There were three (?) providers of supported housing (SH) services from different NY regions: Mr. Huygen from the NYC area, I didn’t get the names of the others, sorry.

Where are the consumers?

Apart from me and my group (Bert Coffman was wearing his many hats), there were no other recipients of services or their representatives. This is a salient point given that this ‘advisory’ committee, as all State and citywide mental health ‘consumers advisory boards’, are for the purpose of ‘giving recipients a voice in our mental health-policy-making system’. I’m sure you can guess why I put those words in curly marks. Read my document The elephant in the NY State mental health system if you can’t guess it.

The lack of consumers (I will call them ‘recipients’ from now on because ‘consumers’ does not describe what we are in this system) participation, in my view, make these boards de facto tools for the providers. Do they need these policy tools when they already have trade organizations and high paid lobbyers, and when they DIRECTLY help write many of the rules that affect us?

I know that Mrs. Frances PriesterMoss (coordinator) is trying to increase recipient’s participation in the committee. I have some ideas that would guarantee participation, but it requires for Ms. Tashjian to help us with the CABs in the programs. More on this below.

Topics discussed

SH, crime in SH and licensing

Ms. Tashjian informed us about all the new projects for housing for the mental health community. I believe her report will be made available soon for public information. She also went over what I call OMH’s SH ‘licensing’ scheme. As some of you know, I have asked her to explain to the public why more than three-quarters of housing are being privatized by un-licensing them, and to tell them that unlicensed means not regulated and no legal rights for the ‘tenants’ in it.

I didn’t get the answer I was awaiting from her. Actually, the whole enchilada about SH and unlicensed housing got more entangled when she discussed the issue of what level of ‘functioning’ is required for each category of housing.

Some of the providers brought the issue of recipients with history of violence been referred for SH. Ms. Tashjian alleges that a history of violence and low functioning are not impediment for acceptance into SH. I claim she is in the wrong there.

OMH is as explicit about levels of functioning requirement for each housing modality as its contradictory actual practice is. Just go online and read OMH’s RFP (request for proposal), each requests spells what type of ‘population’ a particular SH project is made for. This issue of housing people with severe mental health problems in SH, which is for people more ‘stabilized’ and able to function in the community with less supervision (that’s why OMH makes them ‘unlicensed’)  has been discussed in court many times, the last time was in the DAI v. NYS OMH case.

I didn’t want to raise the issue due to not enough time, but I did mention that this policy of housing people with violent history makes the CABs in the programs a necessity so that we can help the providers develop ways to cope with the situation.

I asked her if she was aware of the May incident where a recipient of SH in Brooklyn was murdered INSIDE the building by the woman’s also SH recipient lover. She said she ‘heard’ about it. Did anyone blink? Was the incident reported, as mandated,  to her for investigation on quality of services (could it have been prevented, etc.)?

Look, there is not enough housing to comply with OLMSTEAD, so OMH has been ‘dumping’ (excuse the expression) everybody everywhere. Just as it did when the people demanded to close the chambers-of-torture called psych hospitals of the 1970s; the state dumped the patients to the street. Now, they dump everybody in the few housing. OMH doesn’t care about the ‘unintended’ consequences of its policies. The courts tend to protect them.

There is not enough housing (money goes to ‘stupid wars’), it’s a policy issue. We NEED to discuss this policy as a community.

 Changes to the SH Guidelines = No CAB?

The SH Guidelines will be “updated”, according to Ms. Tashjian, (shall we say) ‘modernized’ to live up to the new millennium (my words). Are the current ‘guidelines’ that state that providers of SH must allow for consumers to participate, this is a direct quote, “in the policy making of the program” to be eliminated?

Ms. Moira brought this information about the changes when I asked her if she could help us to make providers comply with that guideline. She said that she needed to do more “research” about these CABs. I asked her directly to tell me if she was intending to eliminate that particular guideline; her answer was that she couldn’t answer at this point until she reads the guidelines.

When I asked her if she is mandated to inform the recipients about these changes or call for public comments before making the changes, she said that “the providers will be informed”. The context of the answer is that the “SH Guidelines” is for the providers. Whatever changes made will affect you without your consent or knowledge.

I think I also told her that I would consider eliminating the CAB provision to be a BETRAYAL to us recipients of mental health services. I may have used the word “BACKSTABBING”, I don’t remember which one I used. I was just blown away when she mentioned the changes to the guidelines. You can imagine.

None of the providers took a stands to protect the CABs.  I hope they were as blown away as I was and will stand with us if OMH tries to eliminate the CABs provision.

But, more than anything, I hope that Ms. Tashjian has the presence of mind to NOT take a step that will be construed as an attack on our right to have a voice in the programs.

In a time when we are been blamed for the violence in our society, we need to INCREASE our voice, NOT TO HAVE IT SILENCED.

The CABs inside the programs would allow us to reach out for the recipients that OMH supposedly wants to be integrated in the policy decision-making system; it would allow us also to spread information to them. With the problem of lack of housing and having to mix recipients with differing ‘functioning levels’ CABs make more sense as a tool to help maintain quality of services. Working with the providers, the CABs could save $$ to the state by using the rich human power energy and experience currently going to waste and untapped in these programs. Voluntarism can be organized through CABs to improve quality of services.

The only reason I can see for OMH to eliminate the CABs is if they are afraid that we will bring to light all the issues of abuse, disrespect and neglect in the SH programs of all types.

Should they do it, it will confirm my claims that our mental health system functions within a culture of abuse.

Let’s work together to stop the stigmatization and abuse of people with mental disabilities.

Cuomo Agrees to Plan for Housing Mentally Ill, Ending Legal Battle


This is breaking news in the NY Times. Cuomo Agrees to Plan for Housing Mentally Ill, Ending Legal Battle

This is an agreement to ´right´the wrongs committed by many NYS adult homes providers and that NYS judge that made that appalling decision in the case DIA v NYS-OMH etc in April last year. This agreement is a step forwards towards moving the people in those ‘homes’ of horrors to the community.

Am I personally happy and satisfied with this? I don’t go jumping with joy without first taking a quick glance to the text of the so-call ‘agreements’ and new laws to ‘protect’ people with disabilities of all kind. Why? Because one thing are the sound bites we get in the media about how great a new law is, another is the TEXT and the IMPLEMENTATION.

Now, with this agreement, everybody relaxes and forget about it. Just like with the Justice Center, we will assume that the government is looking to protect us. Nothing happens unless you threaten the government. Not even this agreement, the result of years of court battle with the state.

OK. I will NOT sour your joy. IT IS A STEP in the right direction.

I will tell you where we must put caution in this agreement.  You can read the agreement on your own here courtesy of Judge David L. Bazelon Center for Mental Health.

Suffice it say that the agreement WARNS those Adult Homes providers previously caught abusing the mentally ill that they should not interfere with their residents in this process of moving them out, or they ‘will be punished’. Adult Homes are going to lose $$ and they want to keep their houses of horror filled. That there is a NEED for a warning to them should tell you a LOT. (See page 8, part 4 in the agreement.)

First quick notes:

From “definitions” (pages 4 and 5):

1. You have to be 65 years old or under to qualify for the benefit of the agreement.

2. The agreement MAY take 4 or 5 years to be completed. If you are 62 now and you HAVEN’T been relocated within the next two years, you may not qualify anymore. Or at least the agreement doesn’t clarify that. This is a question that those of you in Adult Homes (AH) MUST ask the people involved in this agreement.

3. As usual, the agreement applies to AH that are LICENSED, per Social Services Law Article 7. If you are in an unlicensed one, you may have problem qualifying for the agreement. YOU MUST SEEK CLARIFICATION ABOUT THIS.

4.  AH with LESS than 80 beds do not qualify for the agreement. It (“transitional AH”) has to have 80+ beds AND  a “mental health census” of 25%. If you are in a small AH, you may want to confirm that it qualifies for the agreement.

5. “Impacted” AH are those in NYC with 120 beds or more AND a mental health “census” of 25%  of the population of the AH.

MENTAL HEALTH STATUS: Not so fast baby.

To qualify, a mental health evaluation to measure your level of functioning will be implemented. This is where the ENACTING may go astray, leaving people who are not dysfunctional ‘enough’.

1. Must have a mental diagnosis based on THE MOST RECENT DSM book.  I would say, tread with caution here.

  • ‘what if I my diagnosis is not in the book anymore? They removed some and added new ones.’ See my point?

2.  Excluded from the agreement are people with developmental disabilities, mental illness due to brain damage, and “SOCIAL CONDITION”. I’m as lost as you are on that last one. Looks like a loophole to keep people in. Must check the DSM bible for clarification.

3. “Must have a  SUBSTANTIAL FUNCTIONAL disability WITHIN the PREVIOUS 24 MONTHS before the date of the agreement.” Do you know what a “substantial”  functioning disability means? I suggest you look it up if you want to get out of there. Plus, it is ‘within’ the last 24 months of the agreement. Better check it out how that may affect you too.

4. Who will determine your disability, your substantial functional levels that will ALLOW them to put you in a supported housing?

  • a determination by SSA that you receive benefits due to mental illness will not be enough.
  • A “Health Home agency” AND a  MLTCP (managed long-term care Plan) will be in charge of the process of evaluating your qualification for the agreement. Even if SSA says you are disabled, these people may determine that you are not ‘substantially‘ dysfunctional and may disqualify you. See #5, subsections (b) i and ii on page 5.

So don’t assume that you automatically qualify to be relocated out of the AH just because you are there.

“PERSON-CENTERED PLAN”. Where have I heard that before??

Right, those of us in Supported Housing (SH) are struggling with “person centered support”. Welcome to our struggle. But, I will NOT deny that chances are that, if you make it to a SH, you may be better off than there. Just don’t come here thinking ‘wow, I made it. I’m out of danger’. Nope.

Now, I couldn’t find the dates for the agreement. If any of you find that info, please, forward it. It’s important to you, if you are in one of those homes,  because of the transition schedules. You don’t want to be left out.

My take about this:

1. This is a good step forward.

2. ALL THESE PEOPLE who are coming to the community are going to face the reality of what we have here: SH is over 80% unlicensed. This means, you have NO LEGAL PROTECTIONS there. People centered treatment does not exist. It’s a craps shoot.

3. the ‘culture of abuse’ that exists in those AH will relocate in the community, following our new ‘freed’ peers, with those workers who will get jobs from there to here.

4. TODAY MORE THAN EVER  we need to ORGANIZE our people. For ‘people centered ‘ services we NEED TO BUILD THOSE CABs.

5. Never has the state given ANYTHING without a fight. The NYS WILL BE crying ‘BROKE’ to avoid completing this agreement and creating housing for them. If you want to trust them 100% despite what history shows us, fine.

This is my first reaction to the agreement. Sorry if I sour your joy. I doubt it, though.

CONGRATULATIONS TO THE FORMER DIA.

GOOD WORK.

Welcome And good luck for those of you moving here to the community ‘with us’.

Like we used to say in the ’60s: the struggle continues.

Outline of the origins of the mental health Consumer Advisory Board


This is how I understand the historical development of the consumer advisory board (CAB):

Two events mark the origin and background of CAB:
a) the beginnings of our Federal public mental health policy system (‘mhp’ from here on) and
b) the Willowbrook Consent Decree.

Part I:
A: Beginnings of Federal Public Mental Health Policy System
1) No FEDERAL mental health policy existed before the 1960s because:
a) States controlled mental health services up to that time and
1.  their focus was on funding psych hospitals as the only place for treating the mentally ill.
2. support was for the  psychiatric profession only.
b) because Americans distrusted the federal gov dictating the states what to do. Sounds familiar?

2)  Pres. Kennedy credited with initiating the Fed mental health policy system.
a) started with address to Congress Feb 5, 1963.
b) the process he used was typical of the policy making
process: he ordered a study/research about the situation of the mentally ill in the nation, created a committee to advice him on solution, and presented to Congress his decision on how to try to solve the problem.
c) his focus was on:
1- De-institutionalization of psychiatric in-patients
2- moving them and services for them to the community
3- Prevention
4- assigning funds for those services. By assigning funds, he committed the government to his plan to solving the problem of mental illness.

That same year (1963) Congress passed his Community Mental Health Act: In that way started the federal public mental health policy.

3) His policy consisted in:
a) offering money to the states to participate in his policy, but the money came with a catch:
b) in exchange for the money, States must create an Advisory Council that would:
1. advice the states on what services the mentally ill needed and
2. include protection and advocacy as part of services.
3. be composed of, among others, consumer reps. This is the first federally mandated state mental health advisory council.

In this way WE got into the newly formed Fed mental health policy system.

4) Nine years later came the Willowbrook court case (1972). The
Consent Decree (agreement) stated:
1. This Board [CAB] shall participate in the development of Willowbrook’s philosophy, goals and long term plans, advice the director on a regular basis…”
2. Membership shall include…residents or former residents.”

This CAB was not a mandate to other institutions but served as a model to our nation’s efforts to recover from the haunting history of state-run houses of horror for the mentally ill.

Summary:
These two events (fed mental health policy and Willowbrook) show how:
a) WE were called to participate at both levels of the nation’s new public mental health policy system: at the state and at the facility (program) levels.
b) the background behind the push to create CAB was:
1. Abuses at state’s facilities (policy of states’ ignoring the abuses).
2. Creation of fed mhp as a response to those abuses.
3. A recognition (implied in the laws) that without PARTICIPATION, the mentally ill were doomed to be oppressed by the same mental health institutions/facilities created to serve them.

This new federal policy and CAB were created for US, NOT for the PROVIDERS. There is no language there referring to CAB as an ‘ancillary’ organism in the policy system; CAB is an INTEGRAL PART of our mental health policy because it was meant to be used by us to coordinate with the providers the program’s policies to prevent abuses of power by providers (private and government).

Part II: THE PROMISE CONTINUED
This promise of participation of the mentally ill in the mental health system continued with almost the same language, with all the other Congressional acts that followed Kennedy’s and Willowbrook. For example:

1- McKinney Act: [July 22, 1987]

-Section 11386: “BY REGULATION each provider must provide PARTICIPATION  of…homeless or former homeless…INCLUDING on the BOARD OF DIRECTORS or other EQUIVALENT POLICY MAKING entity of the  PROVIDER…[no money to the provider] “unless provider agrees – to involve the individuals and families THROUGH  employment or volunteer services in the CONSTRUCTING,          MAINTAINING and OPERATING THE PROJECT.”

[How many of you have participated in the “constructing or operating” of your supported housing?]

2- OMH Supported Housing Guidelines (Appendix Goal 4) says that providers must provide us with “formal input into program and policy decisions”.

Thus, de-institutionalization brought the services to the community and we were promised a place at the TABLE! a VOICE in the system to be heard and to make decisions on matters that affects us.

We have even being given the MECHANISM to do that:
a) the state advisory council
b) and the CAB!! But not allowed to use it as intended.

Instead:
– Willowbrook’s CAB turned into end-of-life decision-making
body for these people. NY State passed this bill:

“authorize the CAB to make end-of-life decisions… [for people] who lack the capacity to make their own health care decisions.” NYS-S3169 Feb 10, 2011

That bill shows how important and the extent to which CAB can be used: Consumers together making important decisions. [We wouldn’t use it to make “end-of-life decisions”, though. We don’t need death panels.] But this mechanism is being hidden from us, maybe because it is too powerful a tool to leave in the hands of the ‘loony’? We can ‘decide’ euthanasia for someone else but not how to devise a grievance procedure for us in our programs?

Part III: Policy systems

Definition of POLICY:
1. An informed CHOICE
a) in response to some problem in the agenda of government or organization.
b) includes all DECISIONS /NON-DECISIONS to do something
about the problem: it‘s a conscious decision. As when the federal and state governments chose to do nothing at the beginning of the AIDS crisis, or how states did nothing to protect those being tortured in psychiatric hospitals up to Willowbrook and even today are examples of policy: doing nothing or policy of inaction.

2. The IMPACTS of those decisions are part of the study of the policy intentions; they are FEEDBACK! Always part of policy analysis because of:
a) POTENTIAL FOR INFRINGEMENT OF INDIVIDUAL’S RIGHTS by the policy enacted.
b) CAB are part of that feedback to the policy system’s process. THAT’S WHY WE MUST PARTICIPATE on them.

Part IV: The CORE FUNCTIONS OF PUBLIC POLICY

There are three: Assess, policy development, and assurance. These functions will be used by the City-wide Mental Health Project to assess how CAB in our programs are fulfilling the purpose for which they were created.

Not all of the essential services under each function will be used because we do not have the capacity at this time.

A: Assessments
1. Establish goals to solve problems we identified in prog.
2. Test those solutions
3. Assess the impact
4. Use the results

B: Policy development
5. Inform, educate & EMPOWER our people about the
problems we confront in the program.
6. Mobilize our community/create partnership with
others
7. Develop/plan intervention strategies and support
for our efforts.

C: Assurance
8. Enforce laws and regulations
9. Link people to services needed/GOVERNMENT
10. Evaluate the effect, accessibility and quality of services.
11. INNOVATIVE SOLUTIONS.

This outline and plans to empower our CAB will be reviewed and further developed through out this month.